HealthTree for AML Radio is an online radio series of patient-led interviews with top AML experts. A majority of the interviews focus on learning about a new clinical trial - who is eligible, what is the treatment, and how the trial can benefit you.
When Jenny was first diagnosed with multiple myeloma she found that it was difficult to understand and sort through the hundreds of open clinical trials. With over 450 open myeloma clinical trials, navigating them and finding one that was personally relevant seemed impossible. This encouraged her to start a radio show, initially called mPatient Myeloma Radio. Later the show was changed to Myeloma Crowd Radio and Jenny has since hosted over 132 shows interviewing world renowned myeloma experts. The show is incredibly popular with over a million and a half listeners or readers.
HealthTree is now offering a similar radio program for patients with AML and their caregivers to learn about important AML specific clinical trials directly from the experts.
During each show, we are focused on simplifying the data and asking patient questions about each clinical trial - ultimately, bringing it down to a patient level. At the end of the interview, the show is opened up to listener questions and anyone is welcome to dial-in and ask questions about what was discussed.
You can tune into the show by phone or computer. The upcoming show information is posted on the AML Community website and in the HealthTree for AML Facebook groups. Patients and caregivers are highly encouraged to tune into the show when it's live to ask questions, but if you are unable to make a show, a transcript will be posted shortly after to read and review the show.
Jenny writes, "After I finished three years of treatment, I was cautiously optimistic but realistically worried about the future of my health. Would the aggressive treatment I had “stick” for years or would I have an immediate relapse? Because I am not keen on a last-minute panic attack when it comes to my health, I logged in to www.clinicaltrials.gov to review the open clinical trials, just in case I needed one. I was blown away. There were over 425 active clinical trials testing new drugs or combinations of drugs with names that meant nothing to me.
How was I supposed to choose my next treatment when I didn’t know what the difference was between the various drug names? Or if stem cell transplant was right for me? Or how targeted therapies worked? With a medical community that treats AML differently depending on who your doctor is, how could I find the best, most appropriate clinical trial for me?
That simple question started my journey to find answers for questions we all share. After I learned that fewer than 8% of cancer patients participate in clinical trials, it became very obvious that unless more of us joined these trials, new discoveries were going to take the typical 10 years to find. I don’t think most of us have that kind of time"
Being an impatient patient, I decided to start an online radio show. Not a radio broadcaster by any means, I started interviewing the best and brightest doctors to learn more about the latest, cutting-edge research being done. In my second show, Dr. Guido Tricot said, “Getting the right treatment is not a matter of convenience.” I am finding that pushing the envelope in blood cancer care is equally inconvenient but work worth the reward. I (and I hope many of you) now know what is happening by investigators all over the world and know the key research and clinical trials taking place."
Jenny has seen how beneficial these interviews can be for her personally and for her viewers. It allows patients to engage with world-renowned researchers while simplifying treatments at a patient level.
As mentioned earlier, listeners are encouraged and invited to ask questions at the end of each show. It's an easy way to learn more about potential treatments and address any questions or concerns you may have before enrolling in a new treatment or clinical trial.
New show dates and information will be posted on the HealthTree for AML website in the coming month.
You can go ahead and register for our upcoming show on 9/13 where we will discuss an all oral treatment being studied for newly diagnosed older adults with Dr. Mannis from the Stanford Cancer Center.
Stay tuned for an exciting year of HealthTree for AML Radio!
about the author
Katie joined the HealthTree Foundation as the Community Director for AML in 2021. She is a registered dietitian who previously worked at the VA hospital in Dallas, Texas where she coached veterans with blood cancer on how to use nutrition to improve their treatment outcomes and minimize cancer-related side effects. Katie is passionate about health education and patient empowerment. In her spare time, she loves to experiment with new recipes in the kitchen, spend time running outdoors and travel to new places.
Upcoming Podcast Episode: Weighing FLT3 Inhibitor Options with Dr. Jane Liesveld, University of Rochester